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Chemo Response and Next Steps

After Chemo, it's standard procedure to send you for some scans to access how well your cancer responded to the treatments. Which meant last week I went in for a few tests.

First up was another mammogram. Again, I just want to reiterate for the ladies in the back, mammograms are NO BIG DEAL, so check your boobies! My boob was smushed for 20 seconds or so and then it's over.

Next, we had another breast ultrasound and that of course, everyone knows, isn't painful or invasive. It's the same as an ultrasound you would receive while pregnant, except they are looking at your breast, not your uterus. This particular ultrasound was LONG. I'd say she was swabbing that wand thingy around on my boob for at least a half hour.

Once they were done, they were immediately sent to the radiologist that was in that day. Rather than sending me home, they had me wait for my results before I could go. I had an immediate flashback to my initial breast ultrasound back in November, I began to sweat and I knew something wasn't right. Just. Like. November.

So, I waited. For 23 LONG minutes, I waited. Then, the technician (slash nurse, I'm not 100% sure of her title) came back in and said the radiologist had reviewed the images and the official response to chemo was "very minimal".  I asked her what that meant and of course, she said my Doctors would explain further but that my tumor had not decreased in size much (seriously, hardly at all). She didn't know anything more, so off I went.

Since then, I've learned a bit more, but still not much. Apparently, some tumors simply don't respond to Chemo. Especially, hormone positive ones, like mine. Initially, when I was on my 4 rounds of AC Chemo, I felt the tumor softening and shrinking. But, it never got any smaller once I started the Taxol treatments. I remember asking my Oncologist "that doesn't mean it's not working, right?!" at an appointment. He assured me that it was still working, even if I couldn't feel it shrinking.

Now, of course, fast forward 12 weeks and I get confirmation that it really didn't shrink much. In fact, the measurements went from 4.7cm to 4.6cm!!! That's it. After 16 rounds, nearly 6 fucking months, and my tumor was still the same size. I felt extremely defeated and like I had just wasted the last few months feeling awful, missing out on countless moments with my family, all for what? Nothing?! It couldn't have all been for nothing, could it?

In all honesty, I don't know, but I do know, though, that for the first time since I was diagnosed,  I had a real fear that I actually might not beat this thing. And so I got in my car and I cried and cried. Then I put on my brave face, went home and hugged my kids.

Since then, my doctors have tried to calm my fears and assure me that they will still be able to get the tumor out of me and they will remove all the lymph nodes where the cancer may have spread. When we started this course of treatment earlier this year, the goal wasn't to be cancer free at the end of Chemo (I guess my doctors knew better but I was idealistically optimistic), it was to, hopefully, rid the cancer from the nearby node and prevent the cancer from spreading any further in my body. Which we don't know if we were successful in doing and won't know until surgery.

So, here we are. I've made my decision - double mastectomy - and we have a date. July 22nd. Let's do this shit!

My breast surgeon ordered an MRI, just to see a bigger/clearer picture of my response to chemo. The results were much more positive. It looks as though, the active cancer portion of my tumor has shrunk nearly half, the remaining portion is scar tissue. The lymph node(s) are showing as still enlarged, but not as enlarged as before (they aren't testing them for active cancer until surgery though).

Ringing Out!

You guys, I DID IT!!! I finished nearly 6 months and all 16 rounds of Chemotherapy treatments! There were several moments in which I wasn't sure I could continue, times when I thought I was going to have to throw in the towel, because I felt so terrible, but I didn't, I kept on truckin'!

The boys and I wore special shirts. After everyone was dressed, Matt asked "where's my shirt?" and I of course felt like an incredible asshole. I just assumed he wouldn't want one, my bad, I immediately added a husband shirt to my Amazon cart.

last chemo

I also had special cookies made (from Eight Arms Cookies) that I could hand out to the nurses and support staff. Let me give a quick shoutout to the team at UF Cancer Center, because I've had nothing but wonderful experiences during my time there. I trust my team of Oncologists and Surgeons and the nurses on "5LP" (the chemo wing) have been nothing short of amazing, so, from the bottom of my heart, THANK YOU!!! 

cancer cookies

After my infusion was over, the nurses asked if I wanted to ring the bell. Really?! Hell yes I wanted to ring the damn bell! I earned it!

Yep, that's me

Sometimes, when things don't go your way, you can't do anything but laugh.

Let me explain. You know how you have to renew your driver's license every 10 years? Well, lucky me, it's been 10 years. Which means I had to go to the DMV in person to get a new one. Yep, I had to place myself in a room full of people and all their germs (even though I've been avoiding crowed places since February) just to re-take the vision test and get a NEW photo. Uh huh, a new photo.

You aren't allowed to wear anything on your head in a photo (unless it's for religious reasons), so I couldn't wear a scarf. I really didn't want to go the bald chick route, so that meant I had to wear my wig. I'll be honest, my wig isn't fancy, or that high of quality, but it's not like I ordered it off Groupon or anything. When I left the house that morning, I didn't think I looked that bad. Could I tell I was wearing a wig, yes, but I didn't think it looked ridiculous.

After arriving at the DMV and seeing my appointment time pass by, the time ticked by. The lengthy time waiting at the DMV must have taken it's toll on me, because, well, you'll see. When I got to the window, I took a quick vision test (thankfully my chemo blurry eyes didn't fail me) and then it was time for my photo.

They have you sit on this bench with the camera in front of you...but, here's the thing, the camera isn't at face level! It's at like, stomach level and slightly tilted upward - which everyone knows is a HORRIBLE ANGLE. So, I already knew I would have two (or three) chins in the photo, but I was unprepared for just how bad it would be. Somehow I managed to have 2 chins AND a puffy face.

But that wasn't even the worst part. Once the license was made, they have this watermark/coloring situation which makes my wig look particularly horrific, like it's one of those hairstyles with blonde bangs and brunette hair. I don't even know, it is just, quite honestly, the worst drivers license picture of all time. If it wasn't so damn hilarious, I would be embarrassed to show y'all, but this is SO BAD that I feel I have share it.

So, for comparison sake, here is what I look like in the wig when I'm not at the DMV

And now, here is what I look like in the same wig, at the DMV, from the worst possible camera angle in history...

Yep, there you go folks. Now you can show your own license with pride, knowing it could be much, much worse. It could be mine.

Aside from the DMV fiasco, I've had a banner week in the world of chemo brain. I started making note of stupid shit I did, and it really added up to quite a comical week...
  • I made food in the microwave, then poured my son a drink. In the time it took to walk the drink over to him, I forgot I cooked the food. I knew I had made food, I did not, however, remember that I had put it in the microwave. I looked around for that plate of food for WAY too long. 
  • I washed my body with conditioner. I mean, come on, I'm not even using conditioner these days, so WTF?
  • I got some waffles out of the freezer in our garage. Then, I must have gotten distracted between the freezer and the door, because for some reason I put the waffles on a shelf in the garage and left them there. It took 2 days for me to notice them. 
  • I opened the refrigerator today to see a box of Kraft Mac and Cheese - yeah, unmade, still in the box, which obviously did not belong in the fridge.
To top the week off, I woke up with a nasty cold yesterday. My first illness since starting chemo. Thank you Department of Motor Vehicles. 

Not Today

It's been awhile since I updated the blog, mainly because I'm just so unbelievably tired at the end of every day. I have great intentions of sitting down and blogging and then I can't keep my eyes open. But, I'm fine and I'm still hanging in there. I had the 7th (out of 12) Taxol treatment on Friday. I'm counting down the days until June 14th, my last chemo!

Here's the part of my post where I complain about what this poison is doing to me...

I go weekly now and while this drug is milder than the AC I was on before, it's starting to show it's uglier side now that I'm halfway through it. You have to remember, Chemo is cumulative, which means the effects get more intense over time (with each treatment). This drug doesn't knock me out cold or cause the vomiting I had before. It's more of a sneaky little passive aggressive bitch.

I'm freaking tired and now, my body aches. I have to keep moving, because if I sit too long and then try and get up, I'm a mess. I notice the muscle aches mostly when I'm walking up the steps for the 14th time in an hour because someone forgot something (which is always). My legs feel like I've been working out and my arms are having an even harder than normal time holding Oliver, and all his 34 pounds.

My fingernails literally hurt. It feels like I got them shut in a door, all of them, all the time. Apparently fingernails turn black and die while on Taxol and sometimes the nails lift up from the finger and fall off entirely. So, I wonder if the pain I feel is them dying. I want to prevent any further damage, if possible, so I am applying some nail strengthener nail polish daily. If anyone has been through this and has helpful hints to keep my nails from falling off, please share!

While my fingernails are hurting, the tips of my fingers are starting to feel the effects of neuropathy. I'm wearing my ice gloves and socks during treatment, so I imagine the neuropathy would be more advanced if I wasn't.  I'm noticing my hands aren't working quite as well as they used to. I've always been clumsy, but now I'm fumbling for and dropping things like never before and it's harder to open packaging (plus it hurts my nails if I am too rough in the process).  The tingling comes and goes, so my Oncologist doesn't want to lower my dosage or change my plan quite yet.  I'm just afraid of it getting worse.

I caught a glimpse of myself in the mirror today and realized I have aged 10 years in the past few months. I'm hoping a lot of it is the Chemo and that my skin and coloring will rebound once I'm done. But right now, I feel as bad as I look.

Wearing something on my head, in Florida, while having my body forced into medical menopause (hello, hot flashes) is the worst thing yet. Ok, not the actual worst thing, but it does suck ass. My head is sweating, constantly, whenever I'm wearing a hat/scarf. Forget about my wig, that thing is not only itchy but made of fire - it's hot as hell! So, this means that when I'm home, I'm going commando - nothing on my head, just good old baldness.

I'm not supposed to spend much time in the sun while on Taxol and now I know why, the second sun hits my skin it feels like it's burning. Kind of feels like I have a sunburn, immediately upon exposure. Then, you add a cover on my head and Florida humidity and I am freaking miserable. I seriously hate going outside right now.

After all of that woe-is-me complaining, and in the midst of all of this shit, I find myself incredibly grateful. I mean, I'm here. I AM STILL HERE. At the end of every long day, I always remember that this disease is trying to kill me and I will not let it - not today (in my most Arya way possible).